Sunday, March 8, 2009

Mya's Story

I got this idea from a parent that has helped me with our struggles with Mya. I wanted to tell our story so maybe we could help another family the way that she has helped my family! We also thought this would be a good idea to update our family and friends of her progress!

Mya was born on July 28th, 2008! She was exactly 3 weeks early. After walking laps in my house for several hours I finally convinced myself and my husband that I was in labor! By the time we got to the hospital I was contracting every 1-2 minutes and my blood pressure was high! After checking me.....my nurse wondered if the baby was breech. After confirming it, I was going to have a c-section! Within one hour we had a baby girl....our little angel Mya!

I tried breast feeding....but soon realized how difficult is was! Not only could I not sit up for at least 8 hours, I was also put on Mag Sulfate for my blood pressure. For those of you that have never been put on Mag...it is horrible!!! I pretty much could not get out of bed for 2 days and felt very dizzy when I did.

I started pumping and also supplementing with formula. Mya was a lazy lazy eater from day one! She weighed 7 lbs. 7 oz. at birth and got down to 6 lbs. 12 oz. by the time we left the hospital. We had her weight checked a few days after leaving the hospital and she was still 6lbs. 12 oz. I was worried...but glad that she had stopped losing weight at that point.

So, I kept breastfeeding and pumping until Mya was about 2 weeks old. After trying to feed her for an hour at a time every three hours, I finally gave up! I continued to pump every 3 hours around the clock to give her breast milk. (Which I did until she was 6 months old).

We used the nipples from the hospital for about 2 weeks and honestly that was the best that Mya ever ate. I actually was watching a section on the video camera and I said she was a little piggy! I said she was eating 2-2 1/2 ounces every 3 hours. She was eating this amount at 2-3 weeks old! Little did I know what we had in store for us!

Then we decided we needed to get her to take a bottle and regular nipple. This was such a struggle!! I swear we tried every bottle that was available in Target and Wal-Mart! We finally ended up with the playtex drop-ins.

By the time Mya was 2-3 months old we were having major concerns about her eating. She was only taking 1 1/2 to 2 oz. every 3 hours. She was crying with bottles, pulling her head away, arching her back, moving arms and legs, etc. We switched to a pediatrician in Lafayette. We had an Upper GI done....and it showed nothing.

Dr. Woods was convinced she was having internal reflux so she was started on medication. I seemed to help for a few days...then back to the same old stuff. We started seeing a Feeding Team at Home Hospital for about a month. After a month things were not getting better. We got referred to a Pediatric GI doctor in Noblesville. He also thought that she was having internal reflux. He changed her medications and set us on our way! HUGE MISTAKE!

These problems continued and actually got worse and worse. We were feeding Mya around the clock every 3 hours and were only able to get her to take around 18 oz. per day. She went about 3-4 weeks without gaining weight. She was taking over an hour to eat a small amount of milk. The only time we could get her to eat without crying was when she was half awake! How horrible!

I was going to be going back to work, thank heaven for my mom! Without her and my husband I would be completely insane!!! When Mya was about 4 1/2 months old we had a Feeding Team Apt. That thought her condition was getting worse and that we should get a full GI work-up.

We called our pediatrician and she sent us down to the Riley ER. The date was December 10th, 2008. Matt and I waited in the ER for about 11 hours. I am not a very patient person, but was so desperate for help that we both waited without a peep. After finally talking with the doctor they also thought it was reflux and a milk allergy. (I forgot to mention her horrible rashes she would get on her neck, torso, and creases of arms and legs). The ER doctor tested her poo for traces of blood to confirm a milk allergy. The test came back negative!! Hmmm.....that really surprised the doctor.

I went to nursing school with one of the nurses that was working in the ER that night! Thank heaven!! I don't think without her help we would have gotten admitted! After the stool came back negative she was convinced that something else was going on with Mya!

We were finally going to get help!!! We did not get moved to a room until after mid-night, but we didn't care. Mya was on the verge of dehydration so they gave her fluids through night (after 4 IV attempts- how horrible).

We had a swallow test scheduled for the morning! After only about 3 hours of sleep and seeing about 15 different residents/doctors she was having her test. The test results came back that Mya was aspirating! (Instead of the milk going into her stomach it was going into her lungs!) I couldn't believe it, but as crazy as it seems we were so glad to finally know what was wrong with her!

As any parent would....we thought.....now what do we do??? Then even worse news....Mya would have to have an NG tube until she grew out of her condition. After placing the NG for the first time I fell apart. It was by far the worst moment. Mya cried for probably 30 minutes straight and then got so worked up that she threw up her entire feeding. Thank goodness for all the support from my husband and our families.

Matt and I both had to put the NG tube down 3 separate times before they would let us go home. But home we went in some what good spirits. We were able to attempt bottle feeding for 10-15 minutes and then do the rest of the feedings with the NG.

We were not even home for 12 hours and Mya started to throw up. I'm not talking a little bit! She threw up the entire night, looked pale, and almost lethargic. We called Riley and they wanted us to bring her back to the ER. So, after not even being home for 24 hours we were headed back to Indy! Yuck!

After confirming the placement of the tube with an X-Ray, they felt that maybe she had a flu bug. We had to do two feedings in the ER and she did not throw up. They sent us home after being in the ER for about 6-7 hours. Later that evening I got very sick! As it turns out we all did have the flu. I got it along with my mom, dad, and sister-in-law! It was horrible!!!

Mya then got a horrible chest cold! I think we stayed in the house for several weeks after to make sure she did not get sick!!!

After 6 weeks, we did another swallow test and Mya failed. She actually did worse than the first time. So, now we could not give her any bottles at all. She did pass the section with thick baby foods. So, we were able to start giving her baby food.